Dysautonomia/Adrenal Exhaustion

[brave]

Hi everyone ....In a pickle ;(as you know from my blogs im in a terribly long flare.Im also waiting for a short synathacen test as my endo suspects adrenal gland exhaustion,may answer the flare issue ?perhaps its an adrenal crash and my rheumy is right in saying my lupus is sitting quietly ?but how would an adrenal crash cause persitent swollen lymph nodes and an extreme feeling of ill health?I have mentioned time over that i feel my nervous system is involved in all of this because of my very odd symptoms,they always dismiss this ,i believe its the biggest part of my condition yet .My first experience over a decade ago was because of balance issues,virtigo,tinnitus,bladder,spasms,irregular heartbeat.Are any of you aware of dysautonomia??its a complete disregulation of the autonomic nervous system .Do any of you suffer this as well as lupus/connective tissue disease?out of control and desperate for help ;(

[Maya23]

Hi brave

I can relate to some of what you have written (and in your other post about insomnia). I too seem to suffer from nervous / adrenal exhaustion and I'm suffering at the moment with this kind of flare. I'm sorry to hear that it's being so hard to live with - and it's infuriating that the doctors don't really know how to treat this issue -or perhaps don't even recognise it. I found something online about it the other day. Here's the link:

positivemed.com/2013/04/13/...

What's the synathacen test? That's new to me... can they actually test for adrenal exhaustion? Do you take steroids? If so is this related?

I too get: glands up/headache/exhaustion/painful muscles /dizziness or vertigo/heart palpitations... and a nervous overwhelm feeling - needing dark quiet room treatment. It's the part of the disease that I was diagnosed with M.E. for years before I got a diagnosis of lupus. I find that guided meditation/mindfulness helps to calm things down, and that's how I've dealt with it in the past. It's a case of being patient with yourself and resting and pacing a lot. Sorry, probably not what you want to hear, I am also feeling rather down at the moment about feeling this way, needing to rest but having things I want to get done, and just feeling rather pants generally!

I hope you get some answers soon. If so please share! In the meantime, be gentle with yourself. This too shall pass.

[Maya23 in reply to Maya23]

I've just looked up dysautonomia to find out what it is. Some of the symptoms do sound familiar and it is caused by auto-immune diseases. I too get digestive troubles. Hmmmm. Will be looking into this.

[brave in reply to Maya23]

thanks dyrad ,sending a positive smile to you ;)))

[Maya23 in reply to brave]

I learned from doing some research that adrenal fatigue can be a contributor to the development of an auto-immune disease. When your adrenals are compromised, they can't produce enough Cortisol, the hormone that helps us deal with stress and dampens down any inflammation in the body. That's why corticosteroids are given to people with auto-immune diseases, to make up for the lack of it in their bodies and it's why it helps reduce inflammation.

I wish it were a case a taking a magic steroid pill and it making it all better. Not the case for me, as I react badly to them. Although for others steroids work well.

[mstr]

Hi Brave, I don't think I have a title for exhaustion but like a lot on here I get really bad fatigue and sometimes it almost feels like a crashing fatigue which I describe as like hitting a wall. I go through periods of not sleeping too. For me it is far worse if I don;t pace myself and that's when I get the crashing fatigue which I just have to give in to. It's the hardest part of this condition I think. I hope things get better soon for you Brave x

[brave in reply to mstr]

Weirdly ive lived for over a decade with crashing fatigue ,however the worst the exhaustion and it can come on soon after any stressor ,my whole system goes into overdrive,irregular heartbeats,irregular body temp ,spasms,frequent urination,shaking,feel like i been poisioned,lymph glands swell,and a strong feeling of impending doom,can last for days to ease slightly before the next one hits ,at the time of these crashes its impossible to sleep ,i feel to ill to sleep ,its like my body is flooded with a chemical ,unable to move but unable to sleep ,i assumed with exhaustion you just sleep??not me ;(is this familiar?

[Chablis]

I have posted on numerous occasions about my theory that I have adrenal fatigue and how the medics do not recognise it as a condition, but these posts give me confidence that I am not imagining it. The only way I can improve my symptoms is by supplementing my methotrexate with 10mg of steroids daily and on this dose I can more or less keep going. 6 weeks ago, pre steroid supplementation, I was suffering from huge temperature changes, dizziness to the point of struggling to walk in a straight line, chronic constipation, irregular heartbeat, extreme fatigue ( I describe it as, if there was a fire raging in the house, I would struggle to get out of bed) these sleep periods can last anything fom 1hour to 4, always in the afternoon. I crave sugar as well, put it down to my sweet tooth but think it may be my need for energy. Eyesight has git worse, sleeping patterns at night disrupted.....

Crumbs, if only I could talk to my rheumy as well as I have done here, I always crumble and feel like I am moaning.

Does anyone else get these symptoms and if so, has anyone been given a diagnosis apart from " lupus"?

Best wishes to all

Me

[brave in reply to Chablis]

Im with you all the way chablis,i know steriods would help me but im scared they will worsen my already fried adrenals

[mstr]

Hi, that sounds awful. No I still have flare ups where symptoms worsen and I have more pain, less energy, sensory problems and the usual joint and muscle problems. I also have the ' sense of doom/depression' thing you describe but it only occurs just before a flare up and I now know it's a warning to ease up before a flare up occurs. I don't always sleep very well (like last night) and again this can happen before a flare up or is it just part of the menopause (it's hard to tell as a lot of friends without lupus have this at my age). I kind of separate the crashing fatigue with a flare up. Sometimes I have been doing fine with no flare up when I get this crashing fatigue and it usually occurs if I have done a few things in succession without a rest - nothing heavy just maybe going from one place to another and then calling in some where to rest. The fatigue just hits and I can be feeling great and then I just think I need to get home because of it. So to me what you describe is like two separate things although for you it seems to occur at the same time. However it does it is horrible for you x

[Coppernob]

Chablis, medics do recognise adrenal insufficiency as a condition. I saw my respiratory consultant only yesterday and she ran a random cortisol blood test because we both suspect that adrenal malfunction is contributing to my symptoms.

And I have in the past been diagnosed with dysautonomia

So you are very much not alone so stand your ground and make sure these issues get fully investigated not dismissed as the ravings of a hysterial hyphochondriac :-).

[brave in reply to Coppernob]

hi ,can i ask whst treatment you have for dysautonomia?

[Coppernob in reply to brave]

Ah, now you're asking! Hmmm, did I receive any specific treatment? Really can't remember! But, basically, I think it boils down to the general treatments we need for our AI condition (in my case APS and Sjogren's). That is, reducing inflammation, and therefore reducing inflammation of the brain. In my case I find that's a combination of supportive supplements, the few prescription drugs I take, diet, lots of B12 (I inject daily - crucial for neurological symptoms).

Sorry to be so vague. You know how it is with our memories! (Memory, what memory????) If I remember anything more specific, I'll let you know. (That's if I manage to remember who asked - OMFG!)

Has that helped at all? No, no, dont' bother to answer that

[Chablis]

Thank you copper nob, I am an intelligent woman who held down a high powered job pre early retirement at 42, but I appear to have developed an alter ego that pops up every time I see my consultant. I think it stems from an appointment when I had complained of extreme fatigue, and his response was " so you wanted. To expedite your appointment because you are tired, I can't do anything about that". He had a young pretty student in with him at the time and I think it was a testosterone fuelled comment, and to e fair he has stepped up in the past year but it has left an indelible mark on my memory.

Will you let me know how you get on? And what are your symptoms. Two years ago I went through a lot of respiratory tests as I was getting very dizzy if I got out of breath, in fact it was the start of my recent dip in health ....

Me

[Coppernob in reply to Chablis]

Hi Chablis, yes I'll gladly keep you posted but only (as stated above) if I can remember who the hell asked! Why don't you PM me, then it'll be easier to stay in touch?

Symptoms of adrenal fatigue btw are, well, as you might expect, fatigue, and general malaise, stress. Also, I think I've noticed that I perk up a bit around 11am - which is when cortisol should kick in. In the past I've had 3 abnormal adrenal function tests that showed, amongst other things, low cortisol levels at that time of day, but higher levels than normal at bedtime (hence sleep difficulties). Of course, none of these tests was done on the NHS!

HTH, JudyCoppernob

[chlorophyle]

I can relate to many comments here. I have bipolar disorder and have had muscle pain, frozen shoulder, vertigo, costochondritis (had a trip to A &E that ruled out heart problems but the machines confirmed that my blood pressure was erratic) , and chronic back pain for years. In the past 12 months I have realised that my physical and mental problems are all directly affected by the health of my gut. I know I have injured my gut if I feel despondent and exhausted with an inability to sleep then ( a day or 2 ) later comes the inflammation/ auto-immune response. My body gave me no obvious clues that wheat was a major trigger until I had excluded it for 6 weeks and now my system flushes it out very quickly if I have accidentally eaten gluten or any similar protein ( the type of proteins called lectins found in large quantities in wheat, legumes, potatoes and dairy are particularly hard to digest). I would agree with previous bloggers who have done well on the GAPS diet. I do better eating a basically a paleo (stone age) diet excluding grains, legumes with lots of green vegetables with . You cannot feel a leaky gut - only its after-effects. A leaky gut heals better with reasonable amounts of saturated fats.

[Maya23 in reply to chlorophyle]

This is very interesting. i too have noticed that a flare starts with a feeling of exhaustion and a heavy mood /depression. Sometimes this is accompanied by a night of not being able to sleep (with restless thoughts and uncomfortable digestion) and then the flu-like aches start and increased joint pain. I know I can't digest gluten, that it's inflammatory for me. I've tried to treat my lupus with diet (a mixture of the lupus recovery diet, the GAPS diet and the fasting 5:2 diet) all has helped, but now the sun's out I'm struggling again. There is definitely a link between gut health and levels of inflammation for me.

[chlorophyle]

I would like to add that poor digestion is a major cause of damage to the gut, as bacteria ( which produce toxins) thrive when food is not completely digested and problem bacteria thrive on starch. I am one of the many for whom food combining (Do not eat starchy foods with protein and eat lots of green veg) has made a big difference. My hay fever disappeared in 2005 and I need very lttle bipolar medication. I have had no back pain or costochondritis for a year now. My frozen shoulder last February was horrendous but I knew it had been caused by eating a lot of potatoes and it cleared in 5 days. Anyone looking to learn more about the gut and inflammation would do well to visit the Health unlocked Gluten Free Guerrillas site.

[Maya23 in reply to chlorophyle]

Thanks! Will check it out